Adam W. Hansen, PhD
Computational geneticist · Founder and CEO of Geneial · Houston
I’m a computational geneticist and the founder and CEO of Geneial. My PhD at Baylor College of Medicine was in rare-disease gene discovery. Now I build research infrastructure and AI that help patients, researchers, and therapy developers learn from health data over time, without losing touch with the people it came from.
Background, with sources
- PhD, Molecular and Human Genetics, Baylor College of Medicine (2020)
- BS, Bioinformatics, Brigham Young University (2016)
- Principal investigator on NIH-funded research in rare disease and pharmacogenomics NHGRINLM
- Best Paper Award at ML4H 2025, for work from a Geneial team I led PMLR
- 2026 Young Alumnus Award, Baylor College of Medicine Graduate School of Biomedical Sciences BCM
What I’m working on
Since 2020, I’ve led Geneial, where we’re building what I think precision medicine has been missing: a lasting relationship between patients and the researchers who study their conditions.
- Registries and natural-history studies that people can stay part of for years, with consent, surveys, and follow-up in one place.
- Longitudinal, research-ready data that researchers and therapy developers can analyze without rebuilding it for every study.
- AI agents that turn how families describe symptoms, and the messy formats data arrives in, into standard terms research can use.
Registries for patient communities including Xia-Gibbs syndrome and the HNRNP-related disorders run on Geneial today.
From gene discovery to Geneial
My mother is a nurse and my father is an inventor. I deliberately chose a career that combines the two: using new ideas to relieve suffering. From my father’s work, I learned that a good idea is only the beginning. Getting it to the people it could help is the hard part. So I trained across genetics, entrepreneurship, and healthcare to learn how that happens.
My PhD analysis flagged 154 candidate disease genes. Often we couldn’t move them forward: the clinical picture was incomplete, and we had no reliable way to reconnect with families as new questions came up. Most of what we found never made it back to the families who had contributed their data.
That was the problem I’d been preparing to solve. Geneial’s first proof of concept was built with the lab where I trained: privacy-preserving search of the Xia-Gibbs syndrome registry at Baylor’s Human Genome Sequencing Center, a community whose research I’d contributed to as a graduate student. That registry now runs on Geneial.
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Finding the genes behind rare diseases
PhD research in Richard Gibbs’ group at the Human Genome Sequencing Center. I pooled exome data from 18,696 people referred for suspected Mendelian disease and built a gene-first analysis that flagged 154 candidate disease genes. Follow-up papers characterized disorders tied to POLR2A and KIF1A, and I contributed to studies of Xia-Gibbs syndrome.
AJHG 2019BCM NewsHGG Adv 2021Figure 1. Variants in POLR2A found in 12 people with a developmental disorder, by position along the protein. From my first-author paper in HGG Advances (2021). Data
Variant cDNA Position Type People p.Pro28Arg c.83C>G 28 Missense 1 p.Arg108His c.323G>A 108 Missense 1 p.Arg140Trp c.418C>T 140 Missense 1 In-frame deletion near residue 438 c.1314_1319del 438 In-frame deletion 1 p.Ala1092Val c.3275C>T 1092 Missense 1 p.Ser1094Phe c.3281C>T 1094 Missense 1 p.Thr1136Ile c.3407C>T 1136 Missense 1 p.Asn1251Ser c.3752A>G 1251 Missense 2 p.Gly1418Arg c.4252G>A 1418 Missense 1 p.Arg1603His c.4808G>A 1603 Missense 1 Frameshift at residue 1814 c.5440_5441del 1814 Frameshift 1 -
Infrastructure that keeps data private
Rare-disease data is sparse, scattered, and easy to re-identify, so privacy has to be built in rather than added later. I’m a co-inventor on Geneial’s patent for secure data exchange, which analyzes homomorphically encrypted data without decrypting it, and principal investigator on NIH-funded projects in privacy-preserving connectivity for rare-disease patients (NHGRI) and patient-controlled pharmacogenomic reporting (NLM).
US Patent 12,417,301NHGRINLM -
Research people can stay part of
Registries and natural-history studies built for long-term participation, starting with the Xia-Gibbs syndrome community: electronic consent, patient-reported surveys, and follow-up over time, with data that researchers can actually analyze. Our ASHG 2023 abstract on that registry platform was a Reviewers’ Choice selection.
ASHG 2023Xia-Gibbs SocietyTalkFigure 2. New participants per year in the Xia-Gibbs syndrome registry. 259 people have joined since 2016; 2026 is a partial year. Source: the registry’s public dashboard, October 2026. Data
Year New participants 2016 11 2017 14 2018 13 2019 16 2020 22 2021 17 2022 42 2023 39 2024 33 2025 34 2026 (partial) 18 -
AI for rare-disease research
As part of an ARPA-H-funded data-standardization effort led by RENCI with NHLBI BioData Catalyst, my team builds AI agents that turn messy research data into standard, analyzable formats. One of them, GenOMA, maps rare-disease survey questions to Human Phenotype Ontology terms; the paper received a Best Paper Award at ML4H 2025.
PMLRRENCICode
What I think
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Eventually, every disease will be a rare disease.
The better we understand a disease, the more it splits into smaller conditions defined by genes and mechanisms, each with its own best treatment. Cancer is already going this way. And the rarest cases often teach the most: families with inherited high cholesterol led researchers to a gene called PCSK9, and from there to a new class of heart drugs. Rare disease is where precision medicine starts.
Nat Genet 2003NEJM 2006ACC, 2015 -
Our children will edit DNA to prevent and cure disease.
Newborn genome sequencing is already being tested at scale in England and New York, and I expect it to become routine everywhere. The first CRISPR therapy was approved in 2023. A generation will grow up using its own genetic data to stay healthy longer. What’s missing is the infrastructure to follow people for years and learn what genetic changes, inherited or edited, do across a lifetime. That’s the part I work on.
Generation StudyJAMA 2025FDA, 2023 -
Rare-disease research stalls because patients and researchers lose touch.
Families repeat their stories to every new study. Researchers rebuild cohorts from scratch. The context that would make the next question easier to answer gets lost in between. Participating in research should be a relationship that outlasts any single study, not a one-time transaction.
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Consent is only the first level of data agency.
Data agency is how much say people have over their own data. I think of it in three levels, and most research stops at the first. Each level up earns more trust, and trust is what keeps people involved long enough to build longitudinal data.
- Consent Agree to how your data may be used, and withdraw when you choose.
- Transparency See who uses your data, and for what.
- Control Approve or decline each use yourself.
Selected publications
- An agentic approach to phenotype mapping from rare disease surveys Senior author; *co-first authors. I led the R&D program behind it. Best Paper Award, ML4H 2025.
- Health equity innovation in precision medicine: data stewardship and agency to expand representation in clinicogenomics A case for patient-centered, privacy-preserving data stewardship.
- AHDC1 missense mutations in Xia-Gibbs syndrome Five of the ten individuals came through the Xia-Gibbs syndrome registry.
- Germline mutation in POLR2A: a heterogeneous, multi-systemic developmental disorder characterized by transcriptional dysregulation First and co-corresponding author.
- Phenotypic expansion in KIF1A-related dominant disorders: a description of novel variants and review of published cases *Co-first author; co-corresponding.
- A genocentric approach to discovery of Mendelian disorders First author. 154 candidate disease genes from exome data on 18,696 people.
Recognition and service
- Young Alumnus Award, Graduate School of Biomedical Sciences BCM
- Best Paper Award, Machine Learning for Health (ML4H) PMLRBCM
- NIH peer reviewer Dec 2024 rosterJul 2025 roster
- Industry advisory board, Department of Biomedical Informatics Board list
- Reviewers’ Choice abstract, ASHG Annual Meeting ASHG
- First NHGRI award under NIH’s Small Business Transition Grant for Early-Career Scientists NIH RePORTER
- Winner, Slopes Serves + Hyperquake Creative Sprint
- TMC Biodesign Fellow TMC
Coverage
- Celebrating 11 outstanding Alumni Awards honorees Announcement of the 2026 Alumni Awards, including my Young Alumnus Award.
- Geneial Lands $349K SBIR Grant from National Library of Medicine for PGx Data Exchange The NLM-funded work on patient-controlled pharmacogenomic data.
- XGS Research Grant Update The patient organization on its registry collaboration with Geneial.
- Geneial Proposes Marketplace Approach to Rare Disease Data Sharing A feature on Geneial’s early approach to rare-disease data sharing, with outside experts. Subscriber article.
- Geneial Nabs $2.3M NIH Grant for Rare Disease Data Platform The NHGRI-funded registry platform and the Xia-Gibbs syndrome pilot that came before it.
- Connecting gene mutations, rare genetic diseases Baylor’s story on my AJHG paper and the 154 candidate disease genes.
Speaking
I speak and join panels on:
- Rare-disease gene discovery, and what it takes to turn a candidate gene into a diagnosis
- Registries and natural-history studies that work for patients, researchers, and therapy developers
- Privacy, consent, and giving patients control of their genomic and health data
- AI agents for phenotyping and research data standardization
- Building a company on NIH SBIR and STTR funding as a scientist-founder
Selected talks and panels
- “Updates to the XGS Registry”
- “Precision Medicine in MedTech: Shaping the Future of Personalised Care”
- “How Can We Improve Data Infrastructure?”
- “Industry Insights: Early-Stage Companies and Venture Capital in the Biotech Sector”
- Health equity innovation in precision medicine
- Rare-disease gene discovery
Outside work
Music has been a constant since high school, when I played in New Hampshire’s All-State honors jazz band. You can hear my band, Pändo, on Trembling Giant (Apple Music) and the Vagabond EP (Spotify). I play drums, piano, guitar, bass, and a Suzuki Omnichord, and I’ll pick up just about any percussion or stringed instrument within reach, ukulele included.
For the past four years I’ve volunteered teaching an English as a second language course for native Chinese speakers at my local church congregation. I speak Mandarin and Spanish, and I like basketball, travel, cooking, and learning about other cultures.
Contact
The best way to reach me is a message on LinkedIn. I’m glad to hear from researchers, patient organizations, therapy developers, students, and anyone else working on these problems.
For questions about Geneial’s studies or platform, geneial.com will get you to the right person.